UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

That looks pretty muddled and unhelpful but at least it downplays exercise.
The reason for changing the recommendation was that the evidence was shown to be flawed.

 

I think the clinics are carrying on regardless as far as I can tell. They've just changed the name from Graded Exercise Therapy to Graded Activity Management or come up with their own name. So, instead of one "treatment" to avoid i.e. GET, people now have to be wary of potentially dozens more traps for the unwary.

 

Thanks @Sly Saint this is good.

It is great to see this para:

"Despite all the controversy and 'background noise' around this guideline, everyone agrees that ME/CFS is a chronic, debilitating and disabling condition which is poorly understood. We may not have a cure and specialist support may be limited but using our core GP skills of acknowledgement and recognition, listening and offering kindness, empathy and guided support in primary care will still go a long way to helping our patients."

Though " everyone agrees....." is currently a pipe-dream.

 

Posting from H on LocalME;

Last month the 25% ME Group took two issues to NICE concerning the placement of NG206 recommendations into the on line pathway.

This can be found at the link below.

We are delighted to report that adjustments have been made, as follows:

Under Management, the section on ‘treatments that should not be offered’ now includes the prohibition on graded exercise. See: https://pathways.nice.org.uk/.../me-chronic-fatigue... Previously only the ‘do not offer lightning process’ prohibition featured here.

In addition, this prohibition [recommendation 1.11.14 of the guideline] remains listed at the ‘managing symptoms’ subpath of the ‘management’ path, under ‘physical activity and exercise’.

The recommendations on support to access hospital care [1.8.4 and 1.17.7] had been placed in the ‘social care and support’ section of Management.

These are now listed as a separate stand alone section of the Management subpath:

https://pathways.nice.org.uk/.../me-chronic-fatigue...

Re in patient investigation and treatment, given that a person with ME is just as likely (if not more likely) to require this for a co-morbid disorder than for ME, it’s possible that professionals will miss this guidance unless the patient is able to specifically direct them to it.

So we will be taking steps to help ensure that members are made aware of what the guideline says in this regard and know the direction in which to point their doctor.

In my view this truly has enormous potential for the better as we have come across many examples of people with severe ME who require investigation or treatment on an in patient basis but who simply cannot not face exposing themselves to the routine hospital environment and enduring the after effects, so are going without.

Having said all this, the site is announcing that the pathways will all be withdrawn this spring. It’s not clear what will replace them.

See:
https://www.nice.org.uk/.../we-are-withdrawing-our-nice...

 

NICE Guideline To Be Implemented In Scotland

"NICE news for Scotland! Throughout the development of the NICE guideline for ME/CFS, #MEAction Scotland has been in regular contact with the Scottish Government about the change needed in Scotland. Now that the guideline has been published, the government has got in touch to involve us in a development.

What is the plan?
The government plans to create practical guidance to support the implementation of the NICE recommendations in Scotland. This will be a new process and they have brought in an external consultant, Blake Stevenson, to interview stakeholders and advise on the best way to do this for patients and professionals.

#MEAction Scotland is a stakeholder and will engage as fully as possible with the process to achieve the best outcome for people with ME. The consultation will take place over the next couple of months and we will keep the community updated."

https://www.meaction.net/2022/02/03/nice-guideline-to-be-implemented-in-scotland/

 

It will be interesting to see what differences there are between the Scottish implementation and the English implementation of the NICE guidelines.

 

Has there been an English implementation?

 

Not so far

 

Will there be one? :/

 

Does anyone know how they will go about choosing patient participants?

 

From what I know about MEAction Scotland, they have very well informed members and a wider group of PwME and carers/supporters who have worked closely with the Scottish Govt for years.

 

"Following the new NICE guideline on ME, we believe clinics should now have updated their comms to reflect the new guidance. We are aware of a number of clinics whose communications may not reflect the new guideline. We are working on this with Forward-ME partners."

"We are also asking followers to highlight any recent materials which may not reflect the new NICE guideline so that we can review these with the respective clinics. If you see such issues, please share them below or by email to: peter (at) forward-me .co.uk"

ETA: Added the MEA's tweet to the quote.

 

I’m in shock at seeing such overt coordination of/between the charities.. Hopefully this will be something we see more of under the F-ME banner - can but hope.

 

what about starting with the main NHS England website?
https://www.s4me.info/threads/nhs-e...9th-october-2021-nice-publication-date.23065/

 

Have you let Forward-ME know about it?

 

Excuse me if this is a dumb question or it works differently in the UK.

But will those receiving new research grants from UK government bodies be required to use the criteria in the 2021 NICE guidelines to select ME cohorts? Or it that just for clinical care and they can they continue to use other criteria for research if they wish?